Thursday, July 21, 2011

When I Can No Longer Walk With Conor

My buddy, Conor, 15

One thing about which I have no regrets is the time I have spent with my sons and, in the context of autism and this blog, my time with my 15 year old severely autistic son Conor. Many years ago I vowed to do whatever I could to make his life as enjoyable as his Autistic Disorder and profound developmental delays would possibly permit. To that end I engaged in autism advocacy in our province where, along with other dedicated parents, substantial success was realized. I have advocated specifically on his behalf to the best of my ability. I have spent much time with my buddy cherishing each moment and conscious of the importance of enjoying my time with him. We have had fun, lots of fun. What I have enjoyed most is walking with Conor. In part because walking is something I have always, always, always done.

As a child I was a "wanderer". I loved to just go "exploring" often before anyone else in our very safe military base community was up and awake. I loved to walk the roads of our town and more than anything I loved to walk the trails and woods. With Conor that has been probably my greatest joy just walking with my buddy along the beautiful trails of our community, along the rivers and in the woods.

I have no regrets except that which I can not forestall forever ... the inevitable day when I can no longer walk with Conor and he must walk his own path through whatever wood, into whatever field, his life takes him. I accept it as the reality that looms ever closer without regrets in that I have not squandered the time that I have had, and will not squander the time that remains, to enjoy his presence with us. I do regret that some day my time walking with Conor will end. I will walk with Conor until that day comes when I can not do so, the day when he continues on his own.

Lisa, I don't think he means physically walking with him but that one day he'll have to live elsewhere and decisions may have to be made without Harold's consent (age, illness, accident, death etc). I dread those days, but I've legally done the best I can to protect my son for when those days come.

Man, grab my heart and squeeeze...Some day I won't be able to walk with Wulf, and I suspect that will be more my problem than his... What I fear is that Wulf will not be allowed to walk... on any of our hiking trails, or down by the beach... we walk now because I have given his Agency a letter that releases them from any and all responsibility should any "incident" ocur while he's out with his family. Otherwise, he stays in (a "community rights restriction") because they fear bad publicity, as near as I can determine. This is going to turn into a royal flying monkey parade legal proceeding as soon as I get the time, using the NYS Mental Health Legal Services...

It was a very beautiful piece, and it made me cry. I do think about this a lot. My son and I walk a lot with his NT sister. We enjoy our outings, explore and have fun. many times I look at both of my kids face as they laughing and having a good time, and suddenly I start thinking will happen when i am no longer around or able to do what we do now. It is a very realistic question, but for now, i just try to enjoy what i have and not to spoil the fun, I do pray a lot, that he will be able to do fun things alone when I am no longer around.

I hope you get to walk with Connor for a long time yet, both literally and metaphorically. Both my lads love walking and we are fortunate to live very close to a nature reserve, which easily provides at least a couple of hours amongst beautiful semi countryside. Jacob has no trouble with where we go and just needs keeping hold of to stop him running into the river. Thomas gets more anxious about the route, the time it takes, whether there will be dogs etc and so a bit more careful planning is required for his sake. But both lads are familiar with the route and the walk benefits them enormously.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.